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IN THIS ISSUE


summit
1400 HAEA Friends Share a Memorable 2025 US HAEA National Summit in Baltimore, Maryland

The 2025 HAEA National Summit, held in Baltimore, Maryland, was an incredible success! From July 10–13, more than 1,400 HAEA community members, including people with HAE, their caregivers, medical professionals, researchers, and industry sponsors, came together for an unforgettable weekend of education, empowerment, and connection.

This year’s Summit theme, “Embracing a Brighter Future,” came to life as HAEA friends:
  • Met and connected with others in the community,
  • Shared their stories and learned from one another,
  • Heard about the latest advances in HAE therapies and the underlying science,
  • Joined the movement to protect access to HAE medicines, and
  • Had a lot of fun!
The Summit also featured youth programs designed to provide the youngest HAEA members opportunities to learn advocacy skills, foster friendships, and meet other young people with HAE, their siblings, and children of parents with HAE.

Your presence and commitment demonstrate an enduring unity and collective voice that ensures continued advancements in quality of life for the HAEA community. We look forward to continuing this momentum and building on the connections made in Baltimore as we work toward a future where everyone with HAE has access to the medicine and support services they deserve.

Check out the HAEA’s social media accounts on Facebook, Instagram, and LinkedIn for photos and video clips to recap this year’s dynamic Summit activities!

scholarship
Are you planning to attend a college or university in the Spring of 2026? Applications for the Spring 2026 HAEA Are Now Open!

The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education.

The HAEA has two scholarships available to people with HAE: the Pam King HAEA Scholarship and the HAEA Scholarship for Aspiring Healthcare Professionals. To read more about the details of each scholarship, please visit https://www.haea.org/pages/p/scholarships.

Key Information:
  • Application Period: August 1, 2025 - September 30, 2025
  • Eligibility: Students with a documented HAE diagnosis
  • Membership Requirement: Scholarship applicants must be members of the US HAEA
If you have any questions about the Pam King HAEA Scholarship or the HAEA Scholarship for Aspiring Healthcare Professionals, please contact scholarships@haea.org.
US HAEA Publishes First-Ever Study Showing the Number of People Diagnosed with HAE in the United States
Youth

The HAEA designed this research project to provide a credible estimate of how many people in the US have been diagnosed with HAE. The often-quoted figure of 1 in 50,000 comes from older European studies and only reflects HAE caused by C1 inhibitor deficiency. Our new analysis offers a broader, U.S.-based estimate that includes all forms of diagnosed HAE, addressing a long-standing gap in understanding the true prevalence of the condition.

Recently published in a top rated peer-reviewed medical journal, this landmark study featured collaboration with leading HAE experts and specialists in data mining and demographic analysis.

Our goal was to determine, for the first time, how many people in the U.S. are living with HAE—across all known types. To do this, we had to work around a key challenge: there’s no dedicated diagnosis code for HAE in the U.S. billing system. So we developed and validated a unique model that combined a variety of data sources, including insurance claims for HAE-specific medications. Expert HAE physicians then reviewed anonymized records to confirm whether those cases truly reflected HAE.

We now estimate that nearly 10,000 people in the U.S. have received a diagnosis of HAE. As noted earlier, this number includes all forms of the condition—not just those caused by C1-INH deficiency—and provides the clearest picture yet of the HAE population in the U.S.

Getting this study published in a respected medical journal is a major milestone for the HAEA community. It gives us real numbers to back up what we've long known—that HAE affects more people than older estimates suggested. With this solid, U.S.-based data, we can show we are a bigger force than anyone previously thought. And that puts us in a much stronger position to protect what matters most to people with HAE and their families.

You can read the full study in the Annals of Allergy, Asthma, and Immunology here!

youth leaders
Help Us Celebrate Youth Leaders During HAE Youth Advocacy Month

Do you know a young person who’s making a difference in the HAE community? Nominations are still open for the HAEA Youth Advocacy Achievement League, a special recognition program honoring youth advocates who are raising awareness, sharing their stories, and inspiring change.

Nominations are open until September 5, and those chosen will be recognized during Youth Advocacy Month in October. Don’t miss this opportunity to shine a light on a young leader who’s making an impact!

Nominee Requirements:
  • Must be a member of the US HAEA
  • Must be a U.S. resident
  • Must be 25 years old or younger
Nominate a Young Advocate HERE!

Let’s come together to celebrate the next generation of HAEA advocates!

back to school
Learn with the HAEA Academy: Back to School

The HAEA Academy's Back to School Course is here to help students living with Hereditary Angioedema (HAE) start the school year feeling supported and prepared. This free resource is designed for youth, parents, school nurses, and educators to ensure a safe, informed learning environment for managing HAE in the classroom and beyond.

Whether you’re navigating a new school, advocating for accommodations, or educating staff on HAE, this module offers tools and tips to set everyone up for success!

Take the Back to School Course by clicking HERE!
Access more HAEA Academy courses at academy.haea.org.
travel tips
Traveling With HAE? 6 Important Tips

Traveling with HAE may require extra planning, but it doesn’t have to hold you back. Whether it’s a road trip, international adventure, or quick weekend getaway, being prepared can give you the confidence to enjoy your journey safely. Read this month’s HAEA Community blog for six helpful tips from the US HAEA to make traveling with HAE as stress-free as possible!

Read the blog here!
Health Awareness and HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Back-to-School time for HAE friends can bring unique challenges and stress.

Preparation is key for managing HAE during the school year. In addition to the HAEA Academy course mentioned in the article above, you can also access school resources on the HAEA website.

The HAEA CARE Groups are back after a month off. We missed our times together but enjoyed meeting some of you in person at the 2025 National Summit. So good to see your faces outside of a box on Zoom.

We hope you can join us for some great discussions during our monthly HAEA CARE Groups where HAEA friends share experiences and support each other. Please reach out to the health team at 866-798-5598 or health@haea.org. We are on this journey together.

The HAEA CARE Groups are held virtually three times a month through Zoom.

Upcoming HAEA CARE Group meeting times:
  • 1st Wednesday of the month - 7:30 PM ET / 4:30 PM PT
  • 2nd Thursday of the month - 11:00 AM ET / 8:00 AM PT
  • 3rd Tuesday of the month - 10:00 PM ET / 7:00 PM PT
Clinical Trial icon Clinical Trial Updates

What is a Clinical Trial?
Clinical trials are research studies conducted to evaluate whether a medicine to treat HAE is safe and effective in humans. Clinical trials are a critical part of drug development and are required before a treatment can be approved by the Federal Drug Administration (FDA) and become available by prescription.

What are the benefits of participating in a Clinical Trial?
Clinical trials can offer an open-label extension, which means free access to HAE medicines being studied until they are approved and commercially available. Participation in a clinical trial also provides regular touchpoints with an HAE physician throughout the trial period and allows you to have a more active role in your health care.

Following is a list of clinical trials currently underway. If you are interested in receiving more information on clinical trials, or are interested in participating in any of the trials listed below, please reach out to the HAEA Research Team at research@haea.org.

ALPHA-ORBIT Trial

The US HAEA is currently assisting Astria Therapeutics in recruiting people for the ALPHA-ORBIT trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational subcutaneous injection (Navenibart) given every 3 or 6 months to prevent Hereditary Angioedema (HAE) attacks. This is a placebo-controlled study, but there is a higher chance of receiving the study drug versus placebo. The use of an approved on-demand medication to treat acute attacks is permitted.

You may qualify for the ALPHA-ORBIT trial if you are diagnosed with HAE Type I or II and are 12 years of age or older. After completing the ALPHA-ORBIT trial, participants may be eligible to join the long-term extension trial, and continue receiving Navenibart to prevent HAE attacks at no cost.

The CHAPTER-3 Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the CHAPTER-3 trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational once-daily oral drug (deucrictibant) to prevent Hereditary Angioedema (HAE) attacks. This is a placebo-controlled study, but there is a higher chance of receiving the study drug versus placebo. The use of an approved on-demand medication to treat acute attacks is permitted.

You may qualify for the CHAPTER-3 trial if you are diagnosed with HAE Type I or II and are between the ages of 12 and 75 years old, and have experience using standard-of-care treatment to manage on-demand treatment for HAE attacks. After completing the CHAPTER-3 Study, participants may be eligible to join the open-label extension (OLE) study, and continue receiving deucrictibant to prevent HAE attacks at no cost.

BW-20805-2001 Trial

The US HAEA is currently assisting Argo Pharmaceuticals in recruiting people with HAE for the BW-20805-2001 study.

The BW-20805-2001 trial is a Phase 2 study evaluating a new treatment, siRNA, that interferes with the production of the plasma kallikrein (PKK) gene, intended for long acting prevention of HAE attacks. BW-20805-2001 is delivered subcutaneously once every 3 or 6 months. This is not a placebo controlled trial. Participants will be assigned one of three dosing schedules for the study drug. Following completion of the study, participants will be offered the opportunity to continue taking BW-20805-2001 through an open label extension (OLE) study. You may qualify for the BW-20805-2001 study if you are between 18 and 70 years old and diagnosed with HAE Type I or II.

STOP-HAE Trial

The US HAEA is currently assisting ADARx Pharmaceuticals in recruiting people with HAE for the STOP-HAE study.

The STOP-HAE trial is a Phase 3 study evaluating a new treatment called ADX-324. This potential therapy employs Small Interfering RNA (siRNA) technology, which is a molecular tool that, in effect, tells cells to “stop making this specific protein”. ADX-324, which is designed to be a long lasting subcutaneous preventative therapy, targets plasma kallikrein, a key protein in the biochemical process that ultimately causes an HAE attack. This is a placebo controlled trial where two out of three individuals will receive the study drug. Participants will receive two injections of ADX-324 or placebo over the course of eight months. Following completion of the study, participants will be offered the opportunity to continue taking ADX-324 through an open label extension study. The study is seeking participants who are 18 years or older, diagnosed with HAE Type I or Type II, and willing to stop taking their current preventive medication.

If you have HAE Type I, Type II, or HAE with Normal C1-Inhibitor and are interested in learning about new clinical studies to prevent attacks, please contact an HAE advocate at 866-798-5598 to see if there will be an active clinical trial site in your area.
Join Us at an Upcoming HAEA Event
Capitol Hill
Monday, September 15th at 1:00 PM ET / 10:00 AM PT Youth
Saturday, September 28th at 12:00 PM - 3:00 PM CT
Saturday, September 28th at 12:00 PM - 3:00 PM CT
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The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community’s quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies. Copyright © (2025) US Hereditary Angioedema Association All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means, mechanical, electronic, photocopying, recording, or otherwise without the prior written permission of the US Hereditary Angioedema Association. For information, send an email to info@haea.org.